Ruling Out Medical Issues in Children with Autism….Easier Said than Done!

As you probably know, I’m both a mom to an adult son with autism as well as a Board Certified Behavior Analyst (BCBA). But what you may not know that I’m also a Registered Nurse and I find myself frequently reminding people that some behaviors exhibited by children and adults with autism are caused by medical issues and cannot effectively be treated behaviorally.

Here is a little review of the four main functions of behavior. Most Behavior Analysts (including me) really focus on 3 or them. When a child has a problem behavior, it’s usually for three reasons. The first function, or reaso,n is that the child wants something (usually either an item or your attention) and you say no or tell him to wait. The second reason, or function, for problem behaviors is that the child doesn’t want to complete a task such as eating food that they don’t like or taking a bath. And the third reason a child might exhibit problem behaviors is it for automatic reinforcement so that they my rock, make noises or even bang his or her head when they are not actively engaged.

In Chapter 2 of my book, The Verbal Behavior Approach, I cover the first three functions in pretty much detail but I don’t explain the fourth function (Automatic Negative Reinforcement) too well except to mention that children with problem behaviors which come on suddenly or which you suspect might be medical should be evaluated by a physician.

In many cases, however, it is difficult for you or any physician to determine if a problem behavior is caused by a medical issue, especially in children with autism who cannot fully communicate about pain or discomfort.

I have lots of experience with my own son, Lucas, as well as many clients in the past so I’m going to tell you 2 stories about Lucas to illustrate the importance of looking at medical issues when evaluating a child for the first time or when an established client experiences problem behaviors which start abruptly or increase without a clear explanation.

When Lucas was 6, he started having motor tics. They came on suddenly and over the course of a few days, they were occurring 500 times/day. He also had open wounds on his legs which also appeared “out of the blue.” I googled “acute onset tics” and found a condition called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) which is now known as PANS since many cases of this autoimmune disorder are associated with other bacterial infections other than Strep. Once he was started on an antibiotic, Lucas’ tics went from 500/day back to 0. So we had evidence that these tics were caused by a medical problem and without medication, all the the behavioral treatment in the world most likely would not have helped.

When Lucas was 13, he showed an increase in self injurious behavior (SIB) over a few months time. While in the past he would occasionally bite his knuckle at school, the rate and intensity of his knuckle bites went up significantly (from approximately one knuckle bite a day at school to 10 knuckle bites occurring both at home and school). In addition to knuckle bites, Lucas started to sometimes hit his head and cry.

Lucas’ teacher and aid at school kept careful ABC data and the behaviors usually appeared to be related to access to tangibles and/or escape. But the demands were not higher than usual and sometimes he would engage in problem behavior without a clear antecedent. The professionals who worked with Lucas for years were all concerned that his behaviors were worse than ever. I was concerned too and noticed that sometimes at home when he engaged in problem behaviors, he cried real tears (and engaged in SIB) while on reinforcement. At these times when I asked him what was wrong, he would almost always say “eyes” but I didn’t know if he was saying eyes because he was crying or if he was truly in pain.

I knew as a BCBA that these behavior like his TICS years earlier were not being effectively treated behaviorally so we took him to the pediatrician who agreed to do a battery of blood tests and a CAT scan of his head and sinuses.

While the blood work and CAT scan of the head were within normal limits, Lucas’ sinus CAT scan showed “sinus disease” which responded well to antibiotics and allergy medicine. Lucas also went on to get allergy shots for 5 years which has helped his headaches and sinus issues a lot too.

When I spoke with Dr. Brian Iwata, an internationally recognized behavioral expert, on treating severe problem behaviors after a presentation he did on automatic reinforcement in August of 2016, he told me that no controlled studies have ever been published on problem behaviors with an automatic negative reinforcement function. Yet many BCBAs and parents operate under the premise that the “doctor has ruled out that the behaviors are related to medical issues” therefore they go full steam ahead trying to reduce these problem behaviors using ABA principles alone.

I believe that it is nearly impossible to rule out all medical issues that may be causing or contributing to problem behaviors, especially in children and adults with moderate to severe autism who also have major language delays.

So what can you do with this information….

Think about medical issues that could be at play when assessing a new child or if an existing client shows an abrupt increase in problem behaviors. Many medical professionals now believe autism is an autoimmune disease so researching PANDAS/PANS at www.Pandasnetwork.org may be a good starting point.

Keep and share data between home and school so parents can share behavioral data with the child’s physician

If you are a BCBA or researcher, consider studying behaviors related to medical issues.

Please leave me a comment below and share this post! Also, watch next week’s blog where I’ll discuss how to teach children with autism how to tell you when they are in pain.

8 Comments

My son Kenton, has autism as well as heart issues. He’s 8 years old, received his heart transplant in 2010. His behavioral changes when he’s in school. When he’s not in Schoool his behavior is better. How do we get him to behave at school?

You could request a Functional Behavior Assessment (FBA) be done by a Board Certified Behavior Analyst (BCBA) when he’s at school to determine the function of his problem behavior and this BCBA could also develop a positive behavior support plan after the FBA. You may want to look at Wrightslaw.com for more information on how to request this.

My son, age 9, is autistic, he is verbal, but finds it difficult to convey his thoughts. I also believe he has either a high pain tollerence or doesn’t feel pain like most. A few months ago his hyperactivity increased (he has ADHA, among a slew of other issues) so we upped a med and were seeing an improvement. Then about a month ago we were blindsided by major melt downs that ran the gambit from eloping (he almost unknowing to a 40′ header into a river) to physical aggression to himself and others (including suicidal thoughts). This last month, we’ve had 3 ER visits (one via ambulance from school, 2 mental health holds and another parmedic visit leaving him home since we already had a long-term plan in the works and for now I can handle him. Hopefully, he can start ABA in the next week, but I can’t help, but feel something else is wrong since it came on rather suddenly. I did take him to his pediatrician and he feels that my son wasn’t processing well enough and therefore wasn’t on a therapeutic dose of his ADHD med, which made sense at the time. However, after watching this I am not so sure if it isn’t something else. Is there something else I should be asking his doctor for?

Hi! I have 2 daughters with Autism and ADHD and many others. My younger one has had an issue with bad behaviors for quite some time. I have noticed that she usuly does not get bad unless she is hurting or something like that.She also is limited on her verbal skills.So it is hard for her to communicate what is wrong. She also have been diging at her scabs from cuts or sores as well. The next oldest has recently been diognoste with aggsiete and depression so her bad behaviors stem from that and stress. I have been watching her as well.

My daughter has autism and we had a major change in behavior. Not just bad behaviors, but self harming, her personality seemed very different and she stopped doing activities that she normally was fixated on. The behaviors were so extreme we almost hospitalized her. We pushed for medical testing and found out she had Hashmotos disease (autoimmune) and it triggered severe depression, worsened her anxiety, she was peeling the skin off from her fingers, and it caused physical outbursts that left us bruised and frazzled. She wasn’t able to tell us that there were symptoms that could have helped us like hair falling out, swollen thyroid (it was a lump on her neck), and severely dried skin (she already has skin issues but she didn’t know it was different). As soon as they put her on thyroid, depression & anxiety medication, she leveled out & we slowly got our daughter back. So we worked really hard on verbalizing pain, body awareness and practiced self-checks. (She’s high functioning.) Recently she told me her hair was falling out more than it used to – a sign we need to get her to the Dr to change her medication level. Progress is possible!!